Wednesday, November 30, 2011

November 2011-- Autism Daddy Monthly Facebook Recap


Autism Daddy first launched as a Facebook Page in April 2011.  I added a blog in September 2011 and back-filled the blog with some of my favorite FB Notes.  But what got lost was a lot of the mundane day to day posts.

So in September 2011 I took some of my fav Autism Daddy Facebook Page updates from April thru July and strung them all together in one LONG post that you can read HERE.  

Another 4 months went by and I captured August 2011.  You can read that one HERE.

And then I stopped.  And then this week, with the new Facebook timeline & activity log I went back in to November 2011 mainly because I was trying to find out when Kyle first starting going to see this new dr.  I knew I posted about it, so I wanted to find the date of that post.  While on the activity log I found myself reading everything I posted all over again.  I was like "oh wow, i forgot all about that!"  "wow, remember when kyle did that?"

So I'm gonna start posting monthly recaps for each month.  I do this because (a) I'm a dork, (b) there's some hidden gems in there that would get lost if just left on Facebook (c) it lets people who are new to Autism Daddy get to read some of the older stuff and (d) it's kinda like an online diary of my life and having it on the blog makes it easy for me to search and find...

In one long post it's kinda bizarrely poetic, dontcha think?

So without further ado...here's 56 Facebook posts from November 2011.   I numbered them all for easy referencing. So if you're commenting on a specific post please include the number. :-)

Here goes!!!!

Autism Daddy Greatest Hits
November

1)Halloween was pretty uneventful around the AD home which I guess you could say is a good thing. The wife did report two nice little nuggets from yesterday. 
a) She took Kyle to this BIG supermarket yesterday after school and for maybe the first time (ever?) he didn't need to sit in the cart the entire trip. He just hung out, pushed the cart a little, and went with the flow. This is HUGE for him. Maybe those class trips to the supermarket every two weeks are paying dividends... :-)
b) At the school Halloween parade, mom and his aide caught a glimpse of Kyle dancing to the music. They both looked at each other like "did you just see that?" He kinda shuffled along to the beat. We've caught a few glimmers of this at home. Kinda swaying back & forth to the beat during Dora The Explorer... :-)
That's all... Over & out....
November 1 at 8:50am


2) Sorry I've been so quiet the past day or so. I haven't had much to say which is sort of a good thing. It feels like we are finally in a groove with school with no holidays or days off between now & Thanksgiving.
Oh wait, what's this? Half day today & next Wednesday for parent/teacher conferences? And next Friday off for Veterans Day?
Forget what I just said about a groove. I swear the kid hasn't had a full 5 day school week this year.
November 2 at 11:22am ·  ·


3) Is it wrong that I can't wait for the king to fall asleep so I can sit down and watch the tube? :-) On tonight's agenda the oldie but goodie "Survivor", a new up and comer "Up All Night" and then a new spooky fav, "American Horror Story."
Is anybody else completely hooked on "American Horror Story" on FX? The wife and I are HOOKED....
November 2 at 8:47pm


4) Was I surprised to see a bag of freeze dried strawberries on my bathroom sink as I took my contact lenses out at 1am? No, nothing surprises me anymore. I just sorta smirked to myself... :-)

Goodnight all!

November 3 at 1:16am

5) The King has SOME life! :-) This sounds like a fun day to me! :-)



(although God bless those teachers for taking a class of severe ASD kids to a restaurant with waiter/waitress service)"

November 3 at 8:07am


6) Kyle's autism service dog is legally allowed to accompany him EVERYWHERE. Everywhere that is except my uncle's house for dinner on Saturday according to my mom & uncle. My mom's saying "it's gonna be too crowded. Where is she gonna fit." etc, etc, etc...
Now granted, we haven't been bringing her many places with us lately because Kyle has been pretty good and hasn't needed her. But it should be our choice. We probably would've brought her because Kyle's rarely at my uncle's house, so it's unfamiliar surroundings and she could help there.
Now I don't want to go, but my grandmother lives with them and Kyle rarely sees her and she was just asking to see him. My mom's like "pick & choose your battles, do it for grandma" etc, etc.
I'm debating whether this is a battle worth taking on...
The ironic thing is that my uncle and aunt have a 10 year old ASD son!
November 3 at 12:53pm ·


7)  ‎3:38am, and the king is up. It's his first early wakeup in a week, so no complaints here. After 2 more melatonin, we are hoping that the old Sesame DVD "Sleepytime Songs & Stories" works its magic again...
;-)
November 4 at 3:40am


8)  4:31am and the king is back to sleep after 90+ minutes thanks to melatonin & Sesame Bedtime DVD. And daddy, aka "the snoring machine", is heading to the couch for the rest of the night. The wife spent the first part of the night on the couch. Once the summer ends and the AC turns off and the weather gets colder, I snore like a moose!
November 4 at 4:35am


9) Friday, 8am. Wife & Kyle just left for school and now, like most weekdays, I have a decision to make. I've got about an hour before I need to leave for work. Do I go back to sleep? Or do I get out early and run an errand or two before work (bank, dry cleaners, etc)? On paper sleeps sounds awesome but I usually wake up from a 45 minute nap with a headache and feeling frustrated and more tired than I did before... hmmm, decisions, decisions... :-)
November 4 at 8:05am


10) Kyle went to the Christmas Tree Shoppe on a class trip Thursday...and fell in love with a hat shaped like a turkey. His teachers reported that he wore it around the store for 45 minutes. For him to have anything on his head for that long is huge. When the wife picked him up from school he had the turkey hat on and had this huge grin on his face. When I came home from work, the wife put it on him and he had that same grin. 

The most likely reason he loved the hat? Simple The king LOVES when a people make a BIG fuss over him. The wife is always singing "OH HOW CUTE!! LOOK AT MY KYLE, HE'S SO CUTE!" and he just beams. :-)
November 5 at 7:50am


11) ‎"Kyle you need to take the paper wrapper off the gum before you put it in your mouth. And you're supposed to chew it for a LONG time. And you're not supposed to swallow it...".
:-)
All very hard concepts for the king...
November 5 at 11:23am


12)  So if you've been following this page for awhile you know that Kyle is quite low functioning / severe / non verbal/ bad receptive language and has a hard time retaining anything. He will learn a skill and then lose it and regress. This has been going on for YEARS...
But as you've recently read we've had some success with potty training recently by using an intensive potty routine where for 2-3 days we didn't leave the house and took him first every 10 minutes, then stretched to 15, then 20, 30, 60.
So far, 6+ weeks later and it has kinds stuck!
So it got me thinking is there any other skills that we can teach Kyle by using such an intense method?
Seriously... Any suggestions??
November 5 at 11:38am
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13)  I'm at the nursing home for my weekly visit with my dad. I get to see him for maybe 90 minutes a week. And all he wants to do while I'm here is sleep. I get here and he's sleeping in a chair in the day room with all the other residents. And then I bring him in his room and he wants to go on the bed. Does this even count as a visit? :-)
November 5 at 4:18pm



14) So my wife asked me to pick up eggs on the way home from seeing my dad. So now I'm sitting at the grocery store having the debate I have every time.
Do I buy the organic eggs she wants me to buy that cost $4.50 a dozen or do I say that I can't find those and come home with regular eggs that cost $1.50.
I mean yes, we used to try to eat organic and be healthy but now that the only thing the kid eats is Wendy's nuggets, popcorn, and hot dogs, can't we abandon the organic charade?
I know, I know, a little healthy/ organic is better than nothing. But that's not the debate in my mind.
In my mind the debate is...
a $3 savings... VS... the wrath of Autism Mommy!! :-)
November 5 at 4:52pm


15) Today I will be participating in my 7th NYC Marathon. However, today I won't be running it. I'll be acting as a guide for a disabled athlete through the Achilles Track Club.

 My guy is named Todd ____   and he's partially blind and partially deaf. This will be his 12th CONSECUTIVE NYC Marathon and he hopes to finish in about 8 hours or so. We've never met before but I've spoken to him on the phone SEVERAL times this week. :-) And he is quite a character! It should be an interesting day.
November 6 at 6:46am ·


16)  After 14 marathons I don't think I've ever deserved a marathon medal more than this one.

8 1/2 hours of acting as a guide to a partially blind, partially deaf curmudgeon who stopped every 2 miles to smoke a cigarette. Yes you read that right, a cigarette!!
If I wasn't going to heaven already I think today I punched my ticket. :-)
November 6 at 6:37pm


17) Monday, 6:21pm.
I just drove home from work in the dark for the first time (I HATE turning the clocks back!!)
And I'm sitting in my car in front of my house wondering what I'm about to walk into tonight...
In the immortal words of Han Solo, "I've got a bad feeling about this..."
:-)
November 7 at 6:24pm
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18) Monday 7:40pm, I know I should try to stall Kyle's bedtime by 45-60 minutes so he adjusts his sleep schedule now and doesn't get up at 5:30am now that we turned the clocks back... but for my sanity I really need him asleep now.
Anyway that's Morning Daddy's problem not Nighttime Daddy's. And the two of them are rarely on the same page on anything. :-)
November 7 at 7:44pm
·

19) Did I mention yesterday that the honeymoon period at his new school appears to be over? Oh yeah, big time! Yesterday he had a meltdown to end all meltdowns that left a teacher's aide with a fat lip. And in another unrelated incident on the same day, he did the holding breath stuff enough that his eyes rolled back for a second or two and he was on the verge of passing out a few times yesterday.
Good time, good times! :-(
November 8 at 6:20am ·


20) Tuesday 8am, I'm buckling Kyle into his seat in the car and I'm having trouble with the buckle...and without even looking I instantly knew what the problem was....there was cheerios stuck in the hole where the seat belt goes... :-)
November 8 at 9:25am ·


21)   Wednesday, 7:50am, the wife is struggling to get Kyle's sneakers on when she turns to me and says... "if you're gonna have an accident and pee in your sneakers, Converse is the way to go... 

Much easier to clean than regular sneakers..."
:-)
November 9 at 8:11am


22) Every time the King comes in my car it's the same thing...

"Hands down Kyle... Quiet hands..."

He's pulling the roof down. Why? Who knows...because it's there...because he can?




All I know is when he's in the car, between his big noggin and the fabric roof that's hanging down, I can barely see out of my rear view mirror! :-)

November 9 at 9:27am



23) Thursday, 6:43am... I hear Kyle's door open for the first time this morning...then I hear the bathroom door open....then I hear good ol' fashioned pee-pee on the potty!
He went on his own, first thing in the morning!... instead of holding it and waiting for somebody to bring him.
Nice way to start the day.... :-)
November 10 at 6:46am


24) I got 3 words for you...
Full. Moon. Tonight.
:-)
November 10 at 6:39pm
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25) I am addicted to Pandora Radio... this week specifically "Morris Day & The Time Radio" which plays all the funkiest sh-t... bet you didn't know ol' Autism Daddy was a fan of the funk... :-)
November 10 at 8:34pm ·


26) Kyle had no school today cuz of Veterans Day but he wouldn't have gone anyway. We found 2 small puke stains on his sheet this morning and he took a 90 minute nap this afternoon.
And if that wasn't enough to show that he's got a bug or something he's also being all cute and sweet and cuddling on the couch and quietly reading books. So that means he's gotta be sick.
This sounds mean but we sometimes like a slightly under the weather Kyle. He's so much calmer. :-)
 November 11 at 5:34pm


27) Kyle's interaction with the tv lately is getting kinda crazy. Licking it, touching it, head butting it, smacking it....
It appears that the tv will be another "disposable" device in our household... We've had this one for 2+ years. If it makes it to 4 I'll be SHOCKED!
Next time I'll invest in a super extended warranty and make sure it includes water damage & head butt damage... :-)
November 12 at 8:06am ·

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28) In the past hour my non-verbal son sounded like he approximated the following 3 words somewhat appropriately....pee-pee... cocky (meaning poop)...and daddy.
We haven't taken his temperature but this means that he must have a fever. :-)
I know it's morbid, but whenever I think of Kyle speaking I think of that movie "Awakenings" when Robert Deniro's character is awaken from a catatonic state and becomes totally typical thanks to a new drug...only to have the drug lose its effectiveness after a few months and it all slipped away...
November 12 at 8:55am
·

29) Kyle just had one of his best haircuts ever! No crying, no biting, no kicking... He was stressed and tried to wiggle out of it as usual... but he got thru it...
Is this another byproduct of him being slightly under the weather? Who knows? All I know is I'm thinking "what else should we try today that he normally has issues with?"
:-)
· November 12 at 2:44pm

·
30) I'm in the middle of a self imposed "Breaking Bad" marathon on Netflix.... It's the latest show that's affecting my dreams...
November 12 at 7:31pm ·


31) Kyle is 8 years old, but every morning walking down the stairs appears to mom & dad to be a death defying experience. "Kyle hold on to the railing". "Kyle, pay attention". "Stop leaning forward." "Stop looking back at me, eyes front."
It's like he's walking the high wire act in the circus...
November 13 at 6:01am


32) Today is November 13th and everyone knows that...
"...on November 13, Felix Unger was asked to remove himself from his place of residence; that request came from his wife. Deep down, he knew she was right, but he also knew that some day he would return to her. With nowhere else to go, he appeared at the home of his friend, Oscar Madison. Several years earlier, Madison's wife had thrown HIM out, requesting that HE never return. Can two divorced men share an apartment without driving each other crazy?"
November 13 at 12:49pm


33) One of our biggest "what do we do's" may be happening tomorrow. Kyle has been under the weather for the past couple of days and stayed home from school today with some kinda bug with a small amount of diarrhea and vomiting. It never really got that bad and it appears that he's on the upswing. However, now tonight both the wife and I are feeling kinda nauseous. So how do two sick people take care of a crazy ASD kid who is on the mend and has more energy each day?
November 14 at 9:53pm


34) The wife and I are taking Kyle to the doctor this morning. He's had a bug/virus since Friday. He seems to be past the worst of it, but he hasn't gotten his appetite back and for a kid that normally doesn't eat and has a history of losing weight, we just want to make sure it's not strep or something. If the dr finds nothing, I say send his ass back to school, but we'll see if the boss (wife) agrees...
I hate going to the dr with Kyle cuz my copay is up to $25 and 75% of the time I feel like that $$ is just going out the window...but in the past Kyle has often had mild symptoms of something for a few days before the big thing broke out (flu, strep, ear inf, etc) so we are just gonna spend $25 to rule everything out I guess....
· November 15 at 7:13am ·

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35) I dropped the king off to school this morning about 90 minutes late after a dr appointment. As I'm chatting with his teacher, the aides are getting him set up. As I'm about to leave and I see my little angel sitting so nicely at the table muching on some fruit appropriately... and I'm thinking, will we ever get that Kyle at home? lol.... to get him to sit for 5 minutes straight at home is a miracle... these people really are miracle workers!
November 15 at 12:54pm ·


36) Wednesday, 8:55am. I just dropped the king off at school and I'm driving home and I didn't realize until I was almost home that the Sesame DVD that I had on for Kyle in the minivan for the drive to school was still on... and I was singing along... quite loudly...
I quickly switched to a classic rock station and closed my windows... :-)
November 16 at 9:05am
·

37) Lots of craziness going on with us on Planet Kyle. Not good stuff unfortunately... Way too much to update you on...
Let's just say that his new school, the school we've come to really love over the past two months, BLINDSIDED us yesterday and has discharged him because of his holding breath issues.
It has gotten worse. He does it over 300x a half hour, now while pushing against his neck / jugular and the school is very concerned about him passing out or worse.
So they are kicking him out and recommending a clinic / behavior analyst to help eliminate the behavior. When the behavior is gone, if his spot is still open in the classroom, they will welcome him back.
What they don't care about is that our home school district is the home of red tape and may take weeks before they get approval to send us to this behavioralist.
So we are heading in to Thanksgiving week and then Christmas without a school or a plan for Mr Kyle...
Lawyers have been called...again... :-(
If I'm quiet on here for a few days, now you know why...
November 17 at 7:07am
·

38) Even through very stressful times somehow the wife and I have no problem enjoying a good night of tv and getting a good nights sleep....the drugs help a little too. :-)
November 17 at 7:46pm


39)  I just found Kyke standing in the upstairs bathtub with my Mach 3 razor in his mouth about to attempt to shave his tongue... I stopped him of course, but I got this weird feeling that he knew what he was doing, like he's done that before...
November 18 at 6:50pm
·

40) I LOVE my wife + I LOVE my kid + I LOVE my job + I LOVE my house = my life is a f-cking mess right now...
:-)
How is that possible? Oh, cuz of that other thing that I don't love so much...that we could all do without...
November 19 at 8:36am
·

41) Kyle just handed me the jar of grape jelly. Does that mean he wants a PB&J sandwich you ask? No, it means he wants teaspoons of jelly to shove down his mouth....
November 19 at 4:34pm ·


42) Sign that it's gonna be a good night? I pull up in front of my house after my drive home from work and from the street I can see Kyle sitting at the dinner table and my wife dancing around him... :-)
· November 21 at 6:40pm
·

43) Today was DAY3 of no school due to the breath holding issues....
And amazingly Kyle is having a great week so far...mom & dad, not so much...
We went to a behavior therapist this morning who feels he can help Kyle if we see him for an hour a day until __? But he also agrees that Kyle being removed from the classroom was the wrong course of action...
...
Kyle was great at his office, then wife took him out to lunch at the diner and reported that he did great...

And then he had his aquatic/swim OT session and was very happy throughout....

This whole stressful school situation is being made a bit easier with the King being Mr Mello Yello so far...

· November 22 at 8:17pm


44) First sign that it's Thanksgiving week in the Autism Daddy household.... :-)

November 23 at 6:16am

45) 1/2 day of work + no school for the king = The Muppets movie + The Cheesecake Factory for me, wife, king, and autism device dog Paula...
A pretty good time was had by all, although the King fell asleep about 20 minutes in (which is rare for him) and missed half the movie...
But you know what we learned today? If we put cheeios in Kyles hand while he is sleeping, he will eat them IN HIS SLEEP!! Now we know how to get an extra few hundred calories in... :-)
November 23 at 4:28pm
·


46) To run or to sleep?... that is the question...
Run in a 10k Turkey Trot race at 9am?... or go back to bed for a nap?
· November 24 at 6:49am

47) Paula's one vice. 

She's up to a 5 sock a day habit. :-)"
November 24 at 12:08pm



48) Thursday/Thanksgiving 9:36pm. The king is asleep for the night. It's days like these that I'm so glad that the wife and I live within a 5 mile radius of all our parents.
We were at my in-laws for Thanksgiving dinner since about 3:30pm. Kyle was pretty well behaved for the most part...but was pretty much in his own world / not there today. Some days he can easily be actively engaged by people...today he was kinda out of it...just wandering from room to room :-(
Anyway by about 8:45pm I could tell that we were heading towards a bad place so I gave him his melatonin there, and said to the wife, "I'll take him home and get him to sleep. You stay, hang out with your sibs and help your mom clean".
They live 1.5 miles away. We were home in 3 minutes, went straight into his bedroom and he was asleep in less than 15 minutes as I write this in the dark sitting on the floor of his bedroom.... :-)
November 24 at 9:40pm ·

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49)  We've got family plans with the king for Saturday evening & Sunday afternoon, but nothing on the agenda for today...
It's only 9:24am and I can sense the king is already getting restless...
Any suggestions on what to do, out of the house, that will keep us away from Black Friday shopping crowds and madness??
November 25 at 9:25am ·


50) I just found a styrofoam coffee cup on my dining room floor with a big bite taken out of it.
I picked it up showed it to the wife and said "Kyle or the dog?"
She said "it could've been either."
I said "well let's hope neither one swallowed it...but I'm sure we will know if they did..."
:-)


51) We went to my in law's last night for my dad-in-laws birthday. Big crowd of fam was there. Party didn't start til 8pm. And so we had those decisions... Does wife go solo and I stay home and put Kyle to sleep? Or do we bring him and take turns running after him? Or do we bring him doped up on melatonin :-) so he'll (hopefully) fall asleep while we are there so we can relax and have a good time?
We chose the mealtonin route and it worked out ok I guess. He got to "yum yum yum" down a bag of popcorn and then fell asleep leaning on my dad-in-law at the table. I then put him on their bed and the party continued.
But oh the guilt! He loves blowing out the candles and was asleep for most of the "Happy Birthday" festivities... :-(
November 27 at 8:11am


52) The days of Kyle falling asleep in the car and us being able to transfer him to his bed without waking up are over.
:-(
He fell asleep for the 90 minute car ride home from my sis's house from 6:30pm-8pm. It is now 9:17pm and he is up as a pup...
· November 27 at 9:17pm ·


53) Today is DAY5 of Kyle not in school due to holding breath episodes.
Kyle has three 60 minute appointments with a behavior specialist this week to help us come with a plan of attack that the school will find satisfactory enough to let him back in....
The school is still waiting on a behavior plan even though we've got 3 doctors and this behavior specialist medically clearing him to be back in school ASAP.
This is so f--king FRUSTRATING!! The wife and I made a pact not to discuss it over the 4 day holiday weekend since nothing could be done anyway...but now it's Monday morning and it's top of mind again!
And we are not sure how much of all this Kyle is grasping but every time I say to him "No school today buddy" I'm crying a little on the side because of how well he was doing in school and because of his history of regression.
If you don't know anything about this breathing thing you can read about the history here http://autism-daddy.blogspot.com/2011/11/frantic-email-to-kyles-school-re-breath.html?m=0
And before you say it, we checked and they are not breaking the law. I'll explain in the comments below.
After all the dust settles it may be time to move to a city with a a better / smaller / more competent school district. :-(
November 28 at 8:13am ·


54) A hidden perk of severe/ low functioning/ non-verbal autism?
Kyle has very little understanding of Christmas... which means no Santa, no lists, no hearing a kid whining about how he's gotta have this game or that app, no fighting crowds for the last ___ in stock.
(leave me alone, I'm trying to find a silver lining in all of this :-)
We'll probably get him clothes, some new IPad apps, and re-buy some of his favorite books and toys that he's destroyed over the past year....
November 28 at 8:10pm ·


55) Nothing like a disgusting episode of "Hoarders" to make you feel better about your life.... :-)
November 28 at 11:05pm


56) I've got 4 words for you all...
BIGGEST LOSER MAKEOVER EPISODE...
C'mon Kyle time for bed soon...mommy & daddy have a date on the couch with frozen pizza & biggest loser... :-)
November 29 at 8:32pm
·

AUTISM NIGHT BEFORE CHRISTMAS -- A Poem By Cindy Waeltermann










This poem was written in 2008 by Cindy Waeltermann, who is the founder of the organization Autism Link.

I just discovered it today thanks to a post on my Autism Daddy Facebook Page...

Thought many of you might like it...




Autism Night Before Christmas
by Cindy Waeltermann


Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……



THE END

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-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Wednesday, November 23, 2011

Why We Take Our Son w/ Severe Autism Out Into The World As Much As Possible


(originally written & published on November 23, 2011)


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An autism mom named Heather posted a question for ol' Autism Daddy earlier today after I wrote about a successful trip to the movies and a restaurant today with the King...


---------------
She wrote...
"I notice you take your son out to eat.... Or in public at the very least. Now our sons are like night and day.... My son is verbal and his good moments are great but they don't happen much. In public he can't stand sounds, smells which result in screaming or wandering in the restaurant. How do you do it? We end up with others starring as he hits himself. I would love any suggestions...."
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Well for years the wife and I have always told people that Kyle is very malleable. He would go with the flow.  He was Mr Mellow Yellow. And he was very unlike your typical asd kid... loud noises, crowded places didn't bother him, changes in routine didn't bother him...And he was like that for many years. We could and did take him anywhere and everywhere.

Now lately he goes thru ok stretches and bad stretches... but the wife always says that she never wants to be a prisoner in her own house.   I would be more ok with that.  :-)


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So besides his normal weekend activities (music therapy,  special needs gymnastics, special needs swim lesson), my wife's always coming up with plans of things to do over the weekend.  Ways to fill as many awake hours out of the house as possible.  For the most part Kyle and my wife like being out more than being home.  If he wakes up at 6am on a Saturday and we have nowhere to be till noon, by 11:30am he's usually wrecking the joint / jumping out of his skin / making it clear that he wants to get the hell out.  So we do our best to get the king out early and often....shopping, movies, restaurants, playgrounds, family's houses, even an occasional NY Yankee game...

Even during this REALLY bad summer of 2011 when Kyle was CRAZY with multiple meltdowns, tantrums, kicking, etc, we did our best to still take him out into the world... And for the most part his meltdowns would happen at home or in the car, but usually when we got to our destination he was ok.

Don't get me wrong, he still acts up big time and we go EVERYWHERE with a backpack filled with snacks, books, mardi gras beads, iPad, a change of clothes, etc, etc, etc.  And everyone knows he's autistic, I mean he's eating Cheerios at the restaurant while putting beads in his mouth while attached to a service dog. I mean if that doesn't make you stand out then I don't know what does.  But I've said before that we've rarely, if ever, come across people who are out and out rude.   I mean, yes they stare, but you've got an 8 year old kid licking the window while attached to a dog... I would stare at that.... But I think because it's so obvious that Kyle is different / disabled from the minute you see him we don't get the rudeness that others get.  If we do, we are own little world and are oblivious to it...

And now, since September 2011, the king is going thru a real good stretch and we feel like we have to play the hot hand, try to do as many things as we can while he's in this happy place and see how he does.  My wife's been pushing the envelope a bit and taking him food shopping quite a bit lately and not putting him in the cart, but instead asking him to walk alongside / push the cart.  Today we did the movies and I was the one who suggested, let's roll the dice and go out to a late restaurant and see how he does...

I don't know if my wife feels this way, but when it comes to taking Kyle out into the world and when it comes to leaving Kyle with a sitter and me & the wife going out... I feel like we are racing against time...and time is not on our side.  Maybe that's a morbid way of thinking and maybe some of you parents of severe asd teenagers will tell me differently... but I feel that as Kyle gets older it's going to be more and more difficult to take him out into the world... and it's going to be more and more difficult for the wife and I to have those SELFISH date nights that I keep writing about.   I mean who's gonna watch a 22 year old Kyle so the wife and I can go to the Foo Fighters Farewell Tour 14 years from now...   :-)

So I feel let's try to cram in as many movies, restaurants, Yankee games with the king now... And the wife and I should cram in as many dates nights now cuz I expect the road to get bumpier ahead...

PLEASE TELL ME I'M WRONG!!!

I got a bit off topic there at the end, but I hope that helped answer your question Heather!  :-)

THE END

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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20?  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

Sunday, November 20, 2011

I Need a Thicker Skin: All About Autism, $$, Wives, Jobs, Priorities & Dirty Dishes


get it?  armadillo...thick skin... :-)




(originally written & published on November 20, 2011)

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I think Autism Daddy needs to get a thicker skin.... I mean if I'm gonna put myself out there and let y'all in on every aspect of my life, I have to be open to some criticism right?  But a comment on one of my blog posts really bothered me yesterday.  It was written anonymously by a long time Autism Daddy follower.  She references lots of different blog posts so I'll add links to everything so you can follow along.  I'll put the whole note in its entirety...and then I'll break it down and defend certain points.  Before we begin you should know that she added this comment on my infamous blog post (READ) about who should do the dirty dishes....

Ok, here goes....


"Autism Daddy I've been following you since the beginning. From the early pictures you posted that could have come directly from my house. My youngest son is non verbal and on the severe end of the spectrum, the updates you write I could have written myself, I can 110% relate, we are the same age and my son is also 8. The only difference is my son has a seizure disorder and we have an issue with his weight, on the other end, he's a BIG eater and overweight.

I have older children though, one on the mild end of the spectrum, and typical kids. I work part time as a caretaker for the elderly. I have one day off but that is typically when I schedule one of the kids visit to the doctor/dentist/ neurologist, etc., so in reality it isn't a "true" day off.

I noticed you talk about the expenses Kyle incurs, from the dentist to the co pays to the cookies he eats...but then I see you talk about how you and the wife go out and spend money without complaining.

If money is a real issue, a supportive wife would find a job, somehow, some way. There are plenty of mothers hours jobs, or babysitting or caretaking like I do the little I bring in helps tremendously.

The dishes I understand that's not an everyday thing and I know how worn out I feel some days with 4 kids, my severe non verbal and still not potty trained som, AND my job but if she has 5 free hours each day, it really wouldn't kill her to take 1/2 hour a day to do them.

I know the stress you are going through right down to the school issue, I've been there!! But you got it right in another blog post (READ) when you said you and the wife are selfish- Chris above made an excellent point about how the dishwasher should have been handled. I can't imagine waiting until my partner and I could go shopping alone together, it would never happen!

I know you are entitled to respite use it then and recharge for Kyle. You find sitters to go out to concerts so you two need to get your priorities straight.
I am where you are, our out of pocket dental bill was over $8,000. From when my son was 4, we're still paying. Now I read you took 2 Days off bc of kyles school issues (READ) ? Why? Can you afford that? And is this really all about Kyle or is it all about you???"


Ok, so let me start off by saying that we are a middle class household of 3... we are not lower middle class, some might say based on my salary that I'm upper middle class but I live in one of the most expensive areas in the US so it washes out and bumps us back down to mid-middle class in my opinion.

We are very fortunate that we do not live check to check and have a decent buffer so if I were to lose my job today we'd have enough $$ to pay the bills for ___ months.  I know that we are alot more fortunate than many....

All that being said, why can't I bitch about how much things cost for Kyle and still go out and blow $ on a concert or a night out a few times a month?  Again, I'm bitching about costs for Kyle but I can honestly say that we've never denied him of a therapy or a dr visit or anything because of money if we thought it would be worthwhile.

I've listed in another post (READ) all the things we've tried on Kyle with little or no success. One of those being the super expensive GFCF diet and I bitched about the costs for the 12+ months that he was on it, but we did it.  Another time we spent over $2000 to rent a hyperbaric oxygen chamber for one month in our home. I bitched alot, and of course it didn't help, but if it did help we would've probably bought one and I'd be bitching about that too.

And recently I posted all the things that we pay out of pocket for... (music therapy, swim lessons, gymnastics, OT, ABA, etc, etc, etc) and I bitch when I write every f-cking check, but I still write them...


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I'll readily admit that sometimes we weigh the cost of something to see if it's worth the cost by how much Kyle will get out of it.  Should we pay for a third hour a week of at home ABA therapy at $25 an hour?  Will that 3rd hour make a HUGE difference in his life and/ or his development?  Or should he go to that special needs "movement" class at the local Y on Thursday afternoons instead that only costs $10 per hour?  What would Kyle enjoy more?

And since we've had little or no success with all biomedical treatments I will readily admit that cost plays a part in keeping us from trying a new one... but if I had first hand knowledge from an ASD kid in our life that we know personally HUGELY benefitted by being on this supplement or doing this treatment I'm sure we would dive in and try it no matter what the cost... and I would bitch about the costs...

So I'm never denying Kyle of anything if i think it will benefit him, so why can't the wife and I go out and have a good time as much as possible if we can afford it?  Why can't we be selfish?  Listen, I'm not a husband who drinks or smokes.  The habit of smoking costs a FORTUNE by the way.  I don't disappear on Saturdays to play golf (which is very expensive), I don't go out after work partying very often, or play poker or anything like that.

For the most part the wife and I like to do things together.  Movies, dinner, concerts, going out to dive bars to see rock bands, etc.  What's wrong with that?  And there are times where we ask ourselves... "Is this sitter worthy?" meaning is this event worthy of paying a Kyle-sitter $10 an hour for?  Sometimes we determine it is and we both go out...  Sometimes we determine it's not and we save money... And sometimes we determine that only one of us goes out...  like there was a local bar band that we both really liked and we would take turns seeing them... my wife would go with her autism mom friends one time... and I'd go another time with some old high school friends the next time...

Now let me jump into a couple of other areas of your note.

We know that we have only one kid, and he's a severely autistic kid with ADD and ADHD.   We have no other kids.  And I know you mentioned in your note that you have multiple kids with 2 on the spectrum.

I said in another post (READ) that I don't buy into that "God only gives you what you can handle crap" but maybe I buy into it a little because we readily admit that we couldn't handle any more.  We decided to not have more kids after Kyle because we were fearful for more asd kids (READ) and were afraid that we couldn't handle it.  So yes, many of you have multiple kids and some have multiple asd kids and you hear old Autism Daddy bitching and complaining and you're thinking WTF?, what's he complaining about?  I've got it 5 times harder... To you folks I tip my cap and say, you win... you're obviously stronger than me... having one kid like Kyle is about all I can handle...so I'm weak and you're strong... I've only got 1 kid with asd and I'm on antidepressants...

When it comes to my wife getting a job... I honestly don't see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while...and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle....not a week goes by where she isn't called about something... picking him up early because of an illness... going in early for a meeting.... dropping him off late after an early morning doctor appointment...  It never ends...

And as to why I took off 2+ days this week because of the Kyle recent school issues?  Can I afford to waste 2 vacation/ sick days?  For something as important as meeting with a lawyer, or attending an emergency IEP meeting...you bet your sweet ass I can!  That's what partners are for!

And when it comes to washing the dishes and buying a new dishwasher....ugh I'm so exhausted about this one... I said early in that blog post that we were messy before Kyle and we are even messier with him in our lives...so dishes aren't a priority... a clean house is not that important to either of us... and Kyle is not the kind of asd kid that needs everything in its place so he is fine with it.  and shopping for a new dishwasher isn't a priority either....  Guess what, we still haven't bought a new one!



When I was thinking about writing this blog post I had alot of other things I wanted to say...and they were all excellent points...:-) but I can't remember them right now... You know why?  Cuz it's 8:19am and the wife and I went out AGAIN last night to see a bar band with a bunch of old high school friends and we drank alot and were out til 4am!  So I'm writing this slightly hungover and on less then 3 hours sleep.  I'm letting the wife sleep in because she drank more than me...  She's got a rough week coming up with Kyle not in school due to the holding breath nonsense so she needed a good night out...

If I think of my excellent points I'll add them in later... For now, that's all... now I'm off to dirty up some more dishes....  :-)


THE END!

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Added 2/20/13


If you read some of the comments below from when I first posted this back in Nov '11 you'll see that the 
original anonymous commenter that started this ball in motion :-) commented and explained her side of the story... and as with most things online, it was all a big misunderstanding... She did not mean to be harsh... I was just reading it that way.


I said to someone before I originally wrote this that every time I re-read her original comments it bothered me less and less but I still wanted to write my "rebuttal" just in case others felt the same way...


Anyway, long story short, I don't regret writing this post cuz now you all now ALOT more about me... but I am in no way angry at the original commenter...


Forgive and forget...


THE END #2





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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20?  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!


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